Does Living With Sickle Cell Get Any Easier?

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I was recently on a panel with fellow Sickle Cell Disease News columnist Tito Oye and other sickle cell patients, as part of a sickle cell-focused episode for the YouTube channel Make It Common. It was an amazing experience to participate in this panel and discuss our health journeys.

One question we were asked was, “Does living with sickle cell get any easier?” The other panelists and I turned to each other and laughed, because we all felt as though the answer was obvious. In short, no, sickle cell doesn’t get any easier to deal with.

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Because of time constraints, I was unable to give my answer on camera. Since filming ended, I have pondered this question a lot. Sickle cell has taken a big physical toll on my body. The numerous crises I’ve had in my knees have led to lasting damage in the form of avascular necrosis. This constant pain in my knees has reduced my capacity for walking and exercise.

My mental well-being has also been affected by sickle cell. I’ve realized that as a child, I simply didn’t know how to cope with the possibility of a crisis. I lived in fear of pain I didn’t understand. I’m still processing and recovering from trauma caused by unexpected crises, poor treatment in the hospital, and lack of support.

As an adult, I have to deal with the complexities of what it means to be a man with sickle cell. Sickle cell affects my work life, relationships, and possible future family. All of these issues can weigh heavily on my heart.

However, in life, I like to play the optimist and take a more positive spin on things. A positive mental state helps to reduce my anxiety about a future I can’t control. It’s true for most of us — those with and without sickle cell — that life gets more complicated as we grow older. Although it seems like these mounting complications have been accelerated by sickle cell, I must keep moving forward and improving myself.

I recently started swimming lessons, as I found that swimming is a good way to strengthen the muscles around my knees. Hopefully, by improving my muscle strength, I can reduce the impact of avascular necrosis on my knees.

As an adult in therapy, I can unpack the damage sickle cell has caused to my mental health. I am now at a point where constant self-care and healing are at the forefront of my mind. Living with sickle cell isn’t getting any easier, but it’s not a reason for me to give up. I will do my best to slow down the effects and turn back time on my body.

The future with sickle cell seems uncertain, but I’ll take each unexpected turn in stride and continue to be an optimist.

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

John avatar

John

Can you provide a link to the video?

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